HD is Stealing My Ability to Communicate: This is How We Fight Back
Sarah Foster
Huntington’s disease usually affects a person’s ability to reason, walk and talk and affects cognitive function such as planning, remembering and staying focused 01 . Sarah Foster is doing her best to navigate the disease’s impact on her communication function by working out strategies with her husband and carer, Randy.
As a preverbal baby, even though it almost always caused carsickness, I enjoyed looking out the window during family road trips. A few times, I’d spot an enormous truck, only to see as it would come up alongside us, that it would have no attached payload. I would laugh and laugh then, and I didn't know why until now. It would seem that same flavor of ridiculousness has put my self-destructing brain in charge of negotiating the slowest path to eventual mutism.
Here's what’s happening to my brain
Because of HD, my brainpower has diminished so much that it makes strategic thinking difficult. My brain also rejects most new information. I have been reflecting on how to cope with my current challenges by connecting them to structural ideas I’ve retained. I suspect and hope that adapting methodologies that have helped me in the past, it may improve my brain’s present efficiency.
You can’t teach an old dog new tricks?
The person who trained my service dog, Rupee, told me that it’s nearly impossible to teach a dog not to do something. Instead, it’s much easier to teach them how to do something, especially something they want to do. A good example: a few years ago, I had given Rupee the “dress” command, after which he steps into the harness I hold. One time and one time only, I succumbed to a twinkle in his eye and said, “Play!” We ran around and had fun, but absolutely never since has Rupee dressed on command without a slight pause to see if we will play.
Along the same lines, I believe if I skim over a difficult situation, I am training my brain not to cope with it correctly. So instead, once I realize there has been a miscommunication, I would force myself to break in and say: “Hang on, what just happened there?”
Distracted to distraction
More things distract me now than I can count without becoming distracted. And multitasking is the most common cause and culprit. Talking while walking interferes with safe movements. Eating and laughing may cause me to aspirate. Emotional interference has been a safety issue for years. I cannot perseverate with negative emotions or it will lead to a panic attack.
But I never suspected how ill-equipped I had become at performing most other tasks. While working on my memoir, This Is Me Smiling, I revisited the normal human workplace. It was as I left it: replete with intermittent background conversations and sounds from various media. I had hoped that I still had enough skills to interact with documents and websites in this environment. Unfortunately, the faculties I needed for success were gone. Instead of making progress with my book, I became trapped by consecutive conversation snafus.
There was no malevolent action from my brain or psyche (even though I used to think that is how my relatives with HD operated). My brain was simply not able to match the stimulus the same way it once could. At first, the emotional upset and confusion left me unable to try again for several days.
The trouble, I found, was rooted in combining motor, receptive and expressive styles of communication. Recently, it’s been hard to wrap my mind around how emotion goes hand in hand with language. So, while it makes perfect sense to recognize and acknowledge stress, anger, annoyance, and impatience as feelings I am allowed to have, they didn’t help with the book writing. If I could set those emotions aside, promising myself I could return to them later, I would be better equipped to focus completely on words.
Each morning, I expected to access the writing and focusing skills I had ten years ago.
As I practiced redirecting my emotional energy rather than reacting to it, I felt an immediate sense of relief. A relief so profound, in fact, that I wanted to make the practice my personal superpower.
So far, I only have one self-proclaimed superpower: perseveration. I define it as obsessiveness to such an extreme that it can cause an unexpected external change. But when I perseverate about something unhealthy or unpleasant, Randy helps me refocus my obsessive energy to something positive.
The price of letting it slide
Writing the memoir meant Randy and I had to endure one painfully mismatched conversation after another. Each morning, I expected to access the writing and focusing skills I had ten years ago. Half an hour later, and I was crying because I realized I could never reach that again. Like strangers forced to fight or die, our instincts begged us to steamroll to the nearest solution that would stop this flavor of pain. We soon realized, as Rupee’s trainer would have suggested, that by ignoring it, we were helping the problem repeat itself.
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Randy and I talked instead about how we could better communicate. We workshopped, for example, looking at one another while talking and scheduling when the mode of conversation would change from written to verbal. We practiced these and other replacement behaviors until we both reported our emotional impact per encounter was neutral or better.
We are discovering new situations where we’ve unknowingly let a misunderstanding slide. For example, I sometimes think Randy automatically knows everything I do. I would also ask Randy to help me when I am overwhelmed but would forget to send him the login or necessary info he needs to do so.
From inner child to Little Me
In my memoir, This Is Me Smiling, I recount a collection of traumas that had nothing to do with HD. My, now retired, therapist helped me resolve much of this by empty chair work. My brain took to the hypnotic training of dissociative compartmentalization.
The inner child is a visual manifestation of the part of the psyche that aches from trauma. Ultimately, I give myself license to step outside of the situation, where I could safely see trauma, reassure and offer to protect the ‘child me’ from anything.
In the inner-child framework, my inner-child (now known as Little Me) has become the malfunctioning brain, and I role-play within that framework to improve my response. Sometimes my brain will not stop its chatter until I am addressed by name, or actively led to what is going on.
“No” is a word I often use as a placeholder while I tune in, but I am trying to omit that reflexive no. Do I need more clarity, detail or repetition? Then “say more about it?” is more useful, and is becoming my new volley.
Revisiting Little Me
As I said earlier, the first time I practiced setting aside emotions, it was a huge relief. As I train myself to intercede on behalf of Little Me, I’d say: “Notice, how much stress relief is within our control.” Or, “In the history of people with HD, the probability that my gut response might be invalid (not wrong, not bad, not motivated by what others have decided I must be thinking) is great enough to not respond with that ‘no.’”
We have three dry-erase panels and the side of the refrigerator—places to keep notes that help remind me of priority of tasks, treatment changes and so on. Even though I’m the one who wanted the system, a year later, I still get the vibe that I am entering someone else’s hospital room. A response of “It’s on the board,” means Randy has forgotten as well, or the board data was needed to verify a fact.
Talking about talking
Long before the days came where all hell is continually breaking loose, Randy and I started talking about how we were going to talk. We recognized that conversing with any of my family who had HD was painfully frustrating. It is the same unpleasant feeling Randy and I felt with our mismatches and misunderstandings. We often made assumptions that I now know were mistaken because those assumptions came from our lived experiences as adults under fifty with no neurological symptoms.
The book is in the rear-view mirror now. But going forward I want to continue (or discontinue) using any strategies that could make our way forward easier for Randy. “I don’t want to let you down,” I tell him. And then Randy says, “Every day you get up in the morning, you are not letting me down.” And for an instant, I hear Little Me laughing from a place long before I knew HD existed.
The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.
The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.
NPS-ALL-NP-0 1683 DECEMBER 2025
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